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Birthrights is the UK’s only organisation dedicated to improving women’s experience of pregnancy and childbirth by promoting respect for human rights.

The Legal Officer is a new and critical role at Birthrights to manage our advisory and legal work, including running the advice service, overseeing strategic litigation and providing legal policy input with core stakeholders.

This is a part-time home based role, with a pro-rata salary of £15,000. To find out more and how to apply please download theJob Description.

Research published today and commissioned by Birthrights shows that disabled women are generally not receiving the individualised care and support they that they need to make choices about their maternity care.

Today’s publication includes and builds on the survey research published in 2016 which found that more than a quarter of disabled women asked felt that their rights were poorly or very poorly respected. A quarter felt they were treated less favourably because of their disability, and more than half (56%) felt that health care providers did not have appropriate attitudes to disability. Some found birth rooms, postnatal wards, or their notes and scans “completely inaccessible”.

The new report published today presents data from in-depth interviews with disabled women. It highlights the need to treat disabled women – as all women – as individuals with their own specific needs. It emphasises the need to recognise that disabled women are experts in their own conditions and what they mean for their bodies and choices in childbirth. Participants described distressing scenarios of having to prove that their choices were suitable, undermining their dignity. In one very concerning case, one participant described not being given all the information she needed to make an informed decision about her care during labour, and being denied the choices she would have made as a result. Respecting women’s dignity means respecting and trusting women’s individual needs and knowledge.

Participants also described having to explain themselves repeatedly to each new care provider; at times feeling as if the focus was on their impairment rather than their needs as a person: “You’re not a pregnant woman you’re just a body. Because if I was a person to them, if I was a pregnant woman they would have read my file”. Women who had experienced continuity of carer spoke very positively of their experiences and of experiencing more dignified care.

All women had some poor experiences of postnatal care. In some cases participants did not see the point in raising issues when continuity of care was lacking and midwives were short of time; something the researchers suggest “must raise questions of safety of practice”.

Participants had mixed experiences of antenatal and parenting support: some women were provided tailored support early on but others felt that they were expected to take the lead in asking for what they wanted or found that activities or information were not offered in an accessible way.

Throughout the study, women felt that they had to be empowered, enabled, informed and supported to advocate for their rights. They emphasised the need to be listened to and treated as individuals. Not doing this has a long term impact: women who were not listened to and whose rights were not respected lost confidence and felt undermined long after the birth.

Birthrights’ Chair, Elizabeth Prochaska commented: “It is fundamentally important that disabled women – like all women – receive dignified maternity care that respects their human rights. The research published today highlights that much more work is needed by maternity services in order to provide high quality individualised care to all disabled women. This must include ensuring that all women are given all the information they require to make decisions about their care, in a way that respects their own knowledge about their bodies.”

Professor Vanora Hundley said: “The National Maternity Review, Better Births, highlighted the importance of personalised maternity care that focuses on the needs of the woman and her family. Good communication is a key to achieving woman centred care, and our findings suggest that this remains a particular challenge for women who have a disability.”

Dr Bethan Collins added: “The findings highlight the importance of communication: service providers need to both respect women’s knowledge of their own bodies while also providing the expert support to enable women to make informed decisions about their care.

“Continuity of carer was so important to many of the women, but does not seem to be common practice. As a researcher and as a disabled parent myself, I empathise with the experiences of women in our study. There is a job to do to raise awareness of disability and enable women to have a dignified experience.”

The research suggests that maternity services need to adapt to provide high quality individualised care to all disabled women. This includes improving both attitudes and knowledge of disability and disabled women among maternity professionals, ensuring all disabled women receive continuity of carer, allowing additional time for disabled women to discuss their needs, preferences and choices, auditing access and ensuring that reasonable adjustments as required under the Equality Act 2010 are made available.

The research was conducted by Jenny Hall, Jillian Ireland and Professor Vanora Hundley at Bournemouth University and Dr Bethan Collins, Senior Lecturer in Occupational Therapy at the University of Liverpool.

The outpouring of posts from survivors of sexual violence, assault and abuse as part of the grassroots #MeToo campaign underlines what many of us working in maternity care believe strongly. A significant number of women accessing important services in pregnancy and birth will have experienced trauma in their lives. And sadly, many of these individuals will have been traumatised by sexual violence which may impact on how safe they feel within services which might be triggering of their trauma.

Last week Birthrights was honoured to hold a seminar as part of the Sheila Kitzinger Programme, hosted by Green Templeton College Oxford. You can read more about it in our soon-to-be emailed newsletter. We met to consider how to make truly informed, lawful consent a reality in maternity care in the light of the landmark judgment in the Montgomery v Lanarkshire case. During the day it was clear to all that respectful maternity care, care that protects human dignity and autonomy, is of fundamental import to the physical and emotional wellbeing of women and their families. Moreover the group felt that an individual should not need to disclose previous trauma in order to access care that is sensitive to their needs. As part of our follow-up report we’ll be suggesting that a trauma-informed approach to maternity care, that ensures all services are sensitive to the needs of those who may contend with trauma in their lives, is essential.

Ahead of this report we are grateful to two anonymous survivors of sexual abuse for sharing their personal experiences and perspectives on maternity care with us and with those policy makers charged with the important work of transforming our maternity services. You can find their letters below.

Increasing continuity of carer, ensuring all birth place choices (including homebirth and maternal request caesarean) remain viable options and insisting that our midwives and doctors are given the time and skills within an appropriate organisational culture to be enabled to practice rights respecting care must remain a focus in the Maternity Transformation Programme.

We hope you will help us share their message and add your own below.

Trigger warning: please note that these letters discuss sexual abuse and birth trauma and some readers may find them triggering.

It‘s been unusually noisy in the maternity world over the summer, as media reports have reignited discussion about what a “safe” birth looks like. At Birthrights we believe that the need to listen to women is the mast that all those who care about the safety of women and babies during birth, can cling to when the seas of discussion get rough.

Many women want to avoid unnecessary interventions in childbirth and, on the 15th August, Birthrights CEO Rebecca Schiller wrote about the vital rolemidwifery care plays in ensuring women who don’t need and want intervention have the best chance of avoiding it safely.

We have also been working hard to support a smaller but importantgroup of women who feel a planned caesarean section is the right choice for them. We created our recent maternal request for caesarean campaign to ensure that these women’s voices were heard and to discover the barriers to their requests being granted.

In this blog post, our Trustee, midwifeSimon Mehigan, shares his experience of working with women who want a caesarean for no medical reason, and why the approach of a number of Trusts to shut off this option from the outset, is counter-productive.

“A few years I was employed as a consultant midwife at a large teaching hospital in the Northwest of England. One of my responsibilities was to see all the women requesting a caesarean section in the absence of what was considered to be a medical reason.

Over the course of three years I saw over 500 women. I saw the majority of these women just once with a follow up either by email or by phone. Some I saw twice and for a small proportion I took over all of their care, as it was apparent that continuity would have a significant impact on their decision-making. Here’s what I learnt:

Saying no initially to a women’s request for an elective caesarean section creates an antagonistic starting point for discussion and doesn’t reduce the overall caesarean rate.

I very quickly discovered that by telling women very early on in my conversation with them that “if a caesarean section is ultimately what you want I will help arrange that for you”, that they relaxed, were prepared to listen to what I had to say and were receptive to discussing alternatives.

In fact having met me and discussed their options, 85% of women opted to aim for a vaginal birth of their own accord and over 70% of those women ended up having a vaginal birth.

A couple of women actually informed me after our consultation that because I had said I would support them in their request for a caesarean section that they no longer wanted one. Being told “no” by consultants had made them more determined to have a caesarean section because they were not prepared to let someone else make decisions about their birth.

A de-brief of their last birth often alters a women’s view.

A number of women didn’t understand what happened to them last time. Going through it with them, explaining why things might have happened often helped women in realising that things could be different in this new pregnancy and birth.

After 28 weeks it is more difficult to alter the view that caesarean section is the right choice

Many Trusts schedule these conversations for the last few weeks in pregnancy and yet what I experienced was a direct correlation between the gestation at which I met women for the first time and whether they would be open to explore options that might ultimately feel better to them than a caesarean section. The later I saw them the less likely they were to consider any other options.

The plans of care I developed in conjunction with the women often focused on having an uncomplicated birth with a low threshold for a caesarean section.

The majority of women I saw had had a previous traumatic birth experience. Common themes were a lack of control, lack of communication from staff and a negative experience of induction. Therefore the plans we made together often stated no induction of labour, no rotational forceps, minimal examinations and diverting to a caesarean rather than trying other interventions if the birth wasn’t completely straightforward

Once a decision had been made a line had to be drawn.

Women found it very stressful having to revisit their decision every time they met a health professional.

A caesarean is the right choice for some women.

I have over the years met many women that have felt a caesarean section was the right choice for them. They could all explain rationally why they wanted to birth their babies in that way.

By listening to them, talking to them as an equal and ensuring they felt in control of the process they not only developed confidence in their bodies but more importantly in their caregivers and the organisation irrespective of whether their final decision was to opt for a caesarean section.

In over 20 years as a midwife I have yet to meet a woman that has made irrational decisions or choices. They have always been the right choice for that women based on her individual circumstances.”

On 24th May we launched a campaign to engage with Trusts who state that they do not offer maternal request caesarean sections, thereby denying women the individual respect and consideration they are entitled to. The first Trust we wrote to was Oxford University Hospitals whose policy on offering planned caesarean sections is stated in this leaflet:

OUH responded to our original letter stating that their approach was in full compliance with NICE guidelines, and that they offered a “kind, friendly and professional service”. Unfortunately the reports we have received of women not being listened too, being left shaken by consultations, and being left distressed and anxious knowing that their request for a caesarean section would not be granted by OUH, are at odds with OUH’s account. Therefore, this week, we wrote again to the Trust, their Commissioners, Healthwatch Oxfordshire and the CQC, to share some of your stories and to urge them to reconsider their approach. If you would like to tell us about your experience or requesting a maternal request caesarean section at OUH or elsewhere, please comment below…

We’re really pleased to announce that we have not only updated our own set of factsheets, but have partnered with Mumsnet, to update our answers to their most frequently asked questions about rights relating to pregnancy and birth.

You can find Mumsnet users’ questions and our answers here. Ranging from common concerns about the right to an epidural or a homebirth, to more specific questions about water birth and antenatal check-ups our work with Mumsnet helps us to give definitive answers to millions of women.

We’ve grateful once again to the team at Mumsnet HQ for the chance to speak directly to so many women directly affected by these issues.

About Mumsnet

Mumsnet is the UK’s largest network for parents, with over 10.5 million unique visitors per month clocking up over 100 million page views. It has 170 local sites and a network of 10,000 bloggers and vloggers. It regularly campaigns on issues including support for families of children with special educational needs, improvements in miscarriage care and freedom of speech on the internet.

A Rapid Resolution and Redress scheme was one of the key recommendations coming out of the Better Births report. This month the Department of Health has launched a consultation on this proposal.

Currently families whose children have suffered severe injury due to negligent maternity care have to wait an average of 11.5 agonising years to receive compensation. A Rapid Resolution and Redress scheme should offer a shorter, more supportive option for parents.

Birthrights will be responding and will be publishing a guide to the proposals on our website in the next few weeks. If you have direct experience we would particularly urge you to respond to this consultation and use this opportunity to have your voice heard.

Today is Human Rights Day 2016. Every year on the 10 December we commemorate the day on which, in 1948, the United Nations General Assembly adopted the Universal Declaration of Human Rights. So on this day, when we think about how we can stand up for human rights both here in the UK, and all over the world, we are sharing a guest blog post from Lina Duncan, a midwife (@MumbaiMidwife), who has written about her experience of childbirth in India…

Trigger warning – this piece discusses a stillbirth

I have lived and worked in urban India for nine years and during that time I have found that midwives are missing from the system. I have witnessed how hospital policies, mixed with religious or family tradition, harm women and their babies.

I have heard and read hundreds of stories about women in India who have been pressured into potentially unnecessary interventions with inaccurate, fear-mongering information. This breaks women. It damages them before they even begin to birth and care for their babies. Most women do not speak of these things because they are told that a healthy mother and baby is all that matters.

I have seen and heard of many tragic situations of pregnancy loss or stillbirth where the mother was not told the truth. In each case, the mother was told her baby was in the NICU. She was lied to and denied the right to meet her baby, to make memories, to grieve, to hold her baby. Mothers are too often then silenced in their grief.

I do not believe that a healthy mother and a healthy baby are all that matters. I believe that the truth also matters. Facts, and language, are vital, so that women have all the information they need to make informed decisions. This is especially the case when a care provider has to give difficult, or potentially devastating news.

Truth + Kindness + Compassion = (usually) Satisfaction and Comfort

Half-truths + Lies + Fear = Broken Trust, Fear and Trauma

++++++

I have a friend. She looks a little wild, maybe that’s why I liked her from the start. She often has a vacant look in her eyes. Frequently, she adjusts her clothes and shows me bruises from her alcoholic husband.

She doesn’t know her birthday, nor her age. She looked about 22 when I first knew her, pregnant with her first son who was born in a temporary shelter where she was living on a disused railway platform.

Fast forward a couple of years. I have not seen her for months. Her chaotic life is mostly about daily survival. She feeds her drunk husband first, of course. Then, her son, and then, her pregnant self. She has not had any antenatal check-ups. I persuade her to go with me to the government hospital, with son in tow because she is afraid to leave him with his father.

I show her what to do and entertain her lovely unruly son who is filthy. Everyone stares at me, and her, and it’s awkward and tedious. It takes about seven hours to get completely registered. She is prescribed vitamins, calcium, protein powder. I get her a few of the important ones and open them so they can’t be sold for liquor.

I don’t see her again for months and I worry.

One day she rocks up and calls my name. She is 39 weeks pregnant. She has had no antenatal care for 30 weeks. She does not want to go back to hospital but her husband thinks it’s a good idea. I go with her. The son stays at ‘home’.

The hospital wants to see a sonogram. The machine is broken. We have to pay 400 rupees (£4) for a private one. She has 10 rupees only. I pay. It takes forever.

I’m ‘not allowed’ in with her. Then the curtains are drawn back and I’m invited in. I know it’s not good news. ‘No heartbeat and only part of the brain,’ says the sonographer, to me. My heart sinks. I ask him to tell my friend as my Hindi is not good enough. He tells her and she smiles and says, ‘let’s go get lunch’. She has not understood.

We get food and find her husband, who is drunk, and her 3-year-old son, who has bloody knees and chin from playing alone in a building site. She is angry. I call my consultant doctor friend who works in a government teaching hospital. He invites us to go there immediately.

Another sonogram. Heavily pregnant woman with confirmed anencephalic baby. Drunk husband. Three-year-old doing somersaults all around the hospital wearing his father’s t-shirt and nothing else. We are a laughing stock and I am requested to stay and admit my friend for induction and then remove the husband and son.

She is disturbed that her son is alone with dad and they are not ‘allowing’ her out of hospital. The hospital requests that she fasts and start induction at 5am the following morning. I ask several times, politely, if I may accompany her but it is not allowed. Baby is breech and still alive. I have had lots of conversations with her about what to expect. It hasn’t sunk in. She either doesn’t understand or doesn’t want to.

That night, I tell her I will come and I will be outside the ward until she gives birth and they let me see her. I tell my friend that when she feels alone, she can know I am just on the other side of the wall. This breaks my heart. I am a midwife.

She has to go into the labour ward alone.

A colleague and I sit on the floor outside the labour room for 19 hours. Being a doula through a wall is very hard, especially knowing what she is about to face. No one should have to labour and birth without a companion.

Around 1am we are called into a little room to look at her little girl who has been born dead. I ask to take a picture for my friend. They assure me that she will be shown her baby but don’t let me in to be with her. I take pictures on my phone. They are lovely doctors but I am so angry.

At 4am they let me in to see her and ask me to buy her tea and food. It had been about 30 hours since she has eaten.

It is easy to find her, sitting up in bed with a big grin, announcing she is starving and asking where her food is. I ask her if she has seen her baby and she says, ‘not yet’. I ask her if she wants to see my photos and she says yes. I tell her that her baby was not born alive, that she was a girl, that her heart had stopped beating before she was born. I tell her the truth. She doesn’t ‘hear’ it. She smiles, asks me to come back in the morning and goes into a deep sleep.

In the early hours of the morning my phone rings. Sobs, deep sobs and demands. ‘Come now’, she says. ‘They have killed my baby,’ she says. My friend is distraught in a room full of mothers with their babies.

The day she is discharged I go to bring her home. She’s a darling and so feisty. She laughs and jokes until we walk arm in arm out of the ward. Then her body begins to shake. She says, ‘I came here to have a baby and I’m leaving with empty arms’. I have tears running down my face as well and passers-by gave us kind looks.

My colleagues and I make many visits over the following days and weeks. The family like to see the picture on my phone.

My friend has since had another baby. Her husband sold her when she was only 2 weeks old. This is one woman, one story and she represents many that live in a silent story of abuse and disrespect.

Many of us are longing for the Human Rights in Childbirth conference to be held in Mumbai, February 2017. We hope to hear many women’s stories, hear from researchers, and talk about how a midwifery model of care can be introduced in India. Do follow the conference, and join in the conversation. #breakthesilence

Research published today (15/09/16) by Bournemouth University and commissioned by Birthrights highlights how maternity care may not be meeting the needs of some pregnant disabled women.

A survey of women with physical or sensory impairment or long term health conditions highlighted how– despite most women rating the support they received from maternity health carers positively – only 19% of women thought that reasonable adjustments or accommodations had been made for them. Some found birth rooms, postnatal wards and their maternity notes and scans “completely inaccessible”,while a quarter of women reported that they felt they were treated less favourably because of their disability. Most strikingly, more than half (56%) felt that health care providers did not have appropriate attitudes to disability.

Just over half of the participants expressed dissatisfaction with one or more care providers, particularly their awareness of the impact of disability and their perception that their choices in pregnancy and birth were being reduced or overruled. One participant with a physical impairment and a long-term health condition stated, “No one understood my disability. No one knew how to help or who to send me to for support.” Another added, “I didn’t have any control or any choice. Everything was decided for me.” And one woman said, “They did not listen to me. I advised them on the unique way my body works. They did not listen to my advocates.”

Speaking in advance of the publication of her book Why Human Rights in Childbirth Matter and the Birthrights #newchapter campaign linked to the launch, Rebecca Schiller, chief executive of Birthrights said, “this interim report suggests that there are significant human rights issues at stake for disabled pregnant women in the UK and Ireland. More than a quarter of women we surveyed felt that their rights were either poorly or very poorly respected. This is unacceptable and we will be working hard to address this over the coming years.

After Birthrights’ dignity in childbirth survey (2013) we became concerned that the needs of disabled women in the system were not being met. Though it’s heartening to see how overall most women were satisfied with their care and hear some positive stories of excellent practice there is clearly progress to be made. The women surveyed asked overwhelmingly to be listened to. It is crucial to listen to and trust women to ensure the system is genuinely meeting their requirements and that they are at the heart of decisions about their maternity care. The Equality Act 2010 places a duty on the public sector to provide services that meet the diverse needs of those who use them yet participants indicated worrying lack of attention to accessibility of maternity services and facilities for women with a range of disabilities.

The survey is indicative of a wider problem around women’s rights in childbirth that can impact on all women and often most forcefully on the most vulnerable . This month Birthrights is launching a campaign for a #newchapter in pregnancy and childbirth to ensure safe, quality, respectful care is available to all women. Pregnancy and childbirth are a vulnerable time and the physical and emotional impact on women and their babies of a negative journey through pregnancy and childbirth can be severe.”

Professor Vanora Hundley of Bournemouth University added, “while this is a small survey the findings echo the recommendations of the National Maternity Review published earlier this year, which highlighted the importance of personalised, woman-centred care with continuity of carer. It is clear that these are important considerations for all women, but particularly for those women who have a disability.”

Read the full interim report here.We expected the full report to be released in January 2017 when the qualitative research is completed. With thanks to the Matrix Causes Fund for supporting this work.

Birthrights are excited to be taking part in a joint research project with Bournemouth University looking at disabled women’s experiences in maternity care. The survey below is open now (deadline extended from 3rd June). If you are a mum with a physical disability, please fill in the survey. Otherwise please share the link. The more women we can reach the better!

This is an area that we want to work more on and are planning some qualitative research with Bournemouth University in the future. The survey results will be shared widely. We will also be using them to inform our training and resources.